I woke up at 2 am with what seemed like a panic attack. I cannot stop worrying about what is ahead for us. The monkey has been in this school since he was in first grade, for five years. In about a month, he will be graduating and will need to move on. This school has been our sanctuary. Most of you will recall we had a terrible terrifying experience in his other school. And here, he found a village. From the bus driver to the teacher, to the paraprofessionals that are there to assist, all the way to the principal, he has found support, patience, and love. Although the monkey is non-verbal, he will let us know how he feels about everything. And he lets us know every day how much he loves school. And it will be gone within a few weeks.
I understand this is part of life. Moving on is part of life. But my son is not a typical kid. He needs consistency to strive. He needs to be in a place that understands him. A place that knows him. A place that sees past his disability. And we found this place in this school.
Our next obstacle will be to figure out if we will register him for middle school or put him in an ABA program. I’m terrified for both. We need to find him a place that he will be understood. And I am not sure where that will be. Both will be a change to his routine, with people he doesn’t know. Both will be equally difficult.
Our other concern is summer. When my daughter was young, we would send her to summer camps. She loved hockey and we found a great coach and team. She’d play there for hours and hours. She was safe, taken care of, and she exercised. It was a win-win for us all. But there are no special needs day- cares or camps in our city. There is nowhere that my son can attend. Last year I worked from home with the monkey and it was one of the most hardest things I have done. I was going to have a nervous breakdown. I can’t do that again this year.
And so that leaves me waking up at 2 am with a panic attack of worry of what the future holds for us. We have been thinking of leaving the city in a few years. We need to find a place that has more services for my son. Although we love this city, where I grew up, where our friends and family are, we just can’t stay. We need to find a city that is suitable for kids and adults on the spectrum. We have started to make plans to start this process.
But today, right now, I need to focus on the now. I need to focus on the next few months, not years. My anxiety can’t handle future worries. I will focus on the obstacle at hand: Finding a sitter for the summer.
Crossing our fingers, and toes…
2 Comments Add yours
This decision is not easy and cannot be taken lightly. Though I cannot recommend what path to take because I am not in your shoes caring for monkey, I can share my own experience as a ABA therapist. Even though the science behind ABA is sound, the application is flawed. There is a growing of studies that have found lasting effects of ABA like PTSD, depression, self-harm, suicidality, skill regression, behavior reemergence, among others. These very affects can be difficult to detect for nonverbal/non speaking autistic individuals and who display aggressive behaviors (people normally just think the aggression is autism and not into other meanings). If ABA is to be done, it should in juncture with other services and environments like in school, the community or at home, not only in a clinical setting. RBTs, the technicians that will work with monkey, have low retention rates and will not always be supervised. ABA does not have a standard of practice so different clinics can approach ABA differently. There isn’t oversight which can lead to neglectful practices. BCBAs, the person in charge of creating the programs or “treatment” (yuck), has the power to terminate or discontinue services (or if insurance deems fit). Normally, ABA can lead many individuals to burn out, both technicians and clients. ABA can also create kids who are overly dependent on prompts. It’s very difficult to generalize skills from a clinic which is a contrived environment to a naturally flowing one (e.g. in the community). But I must say, ABA works from some people and clinic setting works for other people. I did not enjoy ABA even in a progressive clinic. Many of the interventions felt like coercion, forceful, and wrong. I cannot count how many times I’ve left the clinic weeping or crying in frustration.
If school worked out in the past then perhaps it’s the way to go. You have dealt and navigated your way through public school. You have the wisdom and the scars to do it again. Full time clinic is another beast. Much like you said, both will be challenging. You will make a decision that best fits you and monkeys needs.
On another note, Texas is one of the worst states for disability services. But around Austin, Round Rock área, there are over night camps, day camps and week camps for disabled kids/adults. There are definitely more options.
Anon – I hope you know how much I appreciate your comment. You are giving me your experience, with the only intention of helping me see a different perspective from the therapist side. Thank you for taking the time. My husband and I will keep this in mind when making our decision. I am an accountant, and I weigh everything. I overthink everything. And analyze everything. Most times, I overdo it. 🤣 But I did feel I was going blind with the ABA therapy option. And your viewpoint is extremely important.
Again thank you. For taking the time to help me out. Thank you. From this weary, tired, and scared autism mom. 🙏🙏🙏❤️❤️❤️